EF downslide -- doggone it!!!! :-(

jojo · 03-08-2007, 10:34 PM

Well, because of my low EF (I even took echo TWICE & muga once), I couldn't qualify for the trial, so here I just ended up with: taking GEMZAR two weeks, one week off.

Naturally, my Herceptin is put on a hold for now.... I had been on it for 4 years, and the ONLY time I ever failed an echo happened only ONCE! Needless to say, my onc & I were perplexed at my recent test results.

I feel just fine -- only an annoying pain in my left shoulder. Back on painkillers, oh well! :-(

QUESTION:

BTW, anyone has done higher response level to Gemzar, compared to other chemos they had taken? If lower actually, I would still MUCH appreciate your '2 cents' input!

Shell · 03-09-2007, 05:18 AM

Jojo-

I'm sorry your numbers are out of whack - it's so hard gearing up for something, with "only" a test to two to take before starting, and then get this news.

I'm sorry I can't give you advice on Gemzar, as I haven't had that. But I hope it does the trick!!

Regards,

Sandy H · 03-09-2007, 06:43 AM

I can feel your disappointment here. Having been there myself. Will keep you in my prayers. Tyklerb should be released soon this week. This maybe an option for you. hugs, Sandy

StephN · 03-10-2007, 12:50 PM

Dear JoJo -

RATS! I am wondering if you are being sent to a cardiologist to check further what could be going on with your heart. I hope so.

There are virtually no studies and little data for us long-term Herceptin users. They used to say that if we were OK with our MUGA and other heart tests in the first few months we should be able to take this drug indefinitely. And many of us here are taking it indefinitely. AND without regular heart followup as the years go by.

We are the ones writing the new chapter. I am wondering also if it is the ABRAXANE which has lowered your heart functions. You took that for many months.

I will pray the Gemzar has the desired effect and that you get to a good heart specialist to get his thoughts. And maybe some medication to help bring up the numbers.

Let us know, OK?

Lolly · 03-10-2007, 06:33 PM

Hi JoJo,

Hate it that your EF is down

Steph's suggestion is a good one, I remember that several here posted about Herceptin causing decreased function, and a cardiologist was able to put things right with medication. Worth pursuing I think.

I'm on Gemzar, 2 weeks on/1 week off, but I've only had 2 cycles so far, so I have nothing definitive to report EXCEPT that the nodes seem to be stabilized, MAYBE feel some shrinkage. I have had a funny rash each cycle, appears by the second day after treatment on my chest and right axilla and arm, and starts to fade by the following week. It's not terribly itchy, just slightly uncomfortable, but the first time it appeared it necessitated a flying trip in to the doc to make sure it wasn't an infection and I was put on antibiotics as a precaution. I've been told to be very alert for problems with breathing as that would indicate a more severe allergic reaction. Otherwise, so far so good. Hope you are finding it tolerable, and hope it WORKS WELL.

<3 Lolly

jhandley · 03-11-2007, 02:02 AM

Hi jojo
You could try Q10 it should improve your MUGA enough to get you on trial. Build up to 200mg a day but stop 3 days before chemo and dont start til 2 days after.
After a few weeks get your MUGA/echo done again..say 6 weeks. There should be an improvement. Q 10 also has an anticancer effect.

Cheers
Jackie

charlotte · 03-11-2007, 10:51 AM

hi: a word of encouragement.... I was on Gemzar, + taxatore for 16 weeks?? anyway, the Dr. says after all the tests were completed.... I am now in remession..... My Dr. said well, I have you in remession now, and its my job (his) to keep you in remession.... I had been stage 1 , node negative, snb negative etc.... almost 2 years to the day it came back with a vengence..... The Dr. had been following me for over a year, and ALL tests came back negative....... ultra sounds, cat scans, upper and lower, colonoscopy , pet scan etc....... ALL neg. the surgon told me ,..... well now you are ready to go to 6 month check ups... 2 weeks later I had approximatley 6 inch, by 3 inch cancer growth under neath my sternum....... so the race was on again............ My Dr. is great......

anywaY, i am rambling on,.... YES..... I got GREAT results with Gemzar.....(NED)!!!!!!!!

For reasons I won't go into now,.... I didn't take chemo the first time......... now if I can just get my heart built up a bit.....I will try to herceptin again????

wish you all the best.....if I can be of help, please let me know..... emails are great...... I am still waiting to take my father for liver cancer surgery , so I am free for a while....

Charlotte

by the way..... the Dr. now has me on zometa (sp)...I have read some rough things about this.... I take it every 3 weeks..... He made a point to tell me to go see a Dentist and to take a certain tooth paste.....etc... I trust him, I just am not totally sure of this zometa....